Community Expert Review Board: Conduit to Culturally Responsive Translational Research

Hakima Tafunzi Payne recognizes and elevates the lived expertise of Black women as Executive Director of Uzazi Village, a non-profit focused on decreasing black infant mortality and racially based perinatal health inequities. As such, Ms. Payne envisioned the development of the Community Expert Review Board (CERB) in 2019 to bring the voices of Black birthing people to researchers conceiving of and designing research. Researchers have historically missed the mark on meeting the needs and addressing the concerns of Black communities. Institutional Review Boards (IRBs) have existed since 1974 to ensure ethical human subject research through the principles of respect for persons, beneficence and justice in research (AMA Journal of Ethics, 2020). Despite the introduction of IRBs, African American recruitment into and successful participation in studies of varied types and on varied conditions remains extremely low. The factors affecting African American study participation range from a deep-seated and pervasive distrust of the intentions of healthcare researchers and academic institutions to logistical barriers and sociocultural factors. Research plays a major role in innovation and breakthroughs in care delivery, so low representation of any group in research amounts to lower understanding of the impacts of potential advancements on those groups. It also results in even slower translation of successful research into application.

Uzazi Village

Mission

Centering Black and Brown families in maternal infant health

Vision

For every family, a healthy baby;

For every baby, a healthy village

Goals

• Decreased prematurity
• Decreased low birth weight
• Increased breastfeeding initiation and duration
• Increased interpregnancy intervals
• Improved management of pregnancy complications
• Improved efficacy of pregnancy self-care
• Improved quality and access to healthcare
• Increased numbers of people of color entering the perinatal professions
• Restoration of the community midwife

​First Year Reflection

• CERB Established with Mission, Vision and Goals
• CERB Member Orientation and Training Designed and Conducted -  including Washington, DC/New York Trip to Collaborate with Bronx Community Research Review Board (BxCRRB)
• KU Clinical and Translational Science Institute Frontiers Research Day 2020 Conference Presenter
• COVID-19 Awareness Campaign Developed and Launched:
  • Pregnancy and COVID-19
  • Breastfeeding and COVID
  • Preparing for Your Virtual Visit
  • Hospital COVID-19 Policy Report

• Health Equity Consulting with the Community Action Board (CAB)
• Consulted on three (3) research concepts and two (2) research surveys
• Development of Health Equity Diagram - Village Model

Goals Moving into CERB’s Second Year

Short-term

• Intentionally conducting targeted outreach and engaging with Universities and student researchers.
• Increasing visibility for mission and existence of CERB
• Increasing number of partnerships identified through power mapping
• Streamlined process for engagement with researchers

Intermediate

• Create avenues within community

Long-term

• Creating national standard for community-based research
• Centering the values of the Black community
• Creating a model/guide of what centering the Black community looks like
• Centering Black Maternal Infant Health as a national issue